It all started with the purchase of a sparkly red tuxedo.
He bought the sparkly red tuxedo because he wanted to dress like Shoji Tabuchi when he fake played his fiddle. My son Casey is 28 years old, has autism and epilepsy and is an avid Shoji fan. He has all of Shoji’s music in all its various forms: VHS tapes, DVDs, CDs and cassettes. He silently plays along with Shoji, physically scripting if you will, the movements Shoji makes as he plays. His own fiddle never makes a sound.
Casey and I had set off that day in search of fall colors, but the farther we drove the more I realized I might have planned this trip a little too early; all we saw was a forest of green. Trying to save the weekend outing, I headed to Branson, Missouri, knowing Casey would forget all about red and yellow leaves if I offered a Shoji show instead.
Sure enough, the excitement grew as we began to see the numerous billboards that dotted the highway promising oodles and oodles of musical fun. The closer we got to our destination, however, the worse I was feeling. I was coming down with something, and by the time we checked into a hotel the last thing I wanted to do was leave. So I promised Casey I would bring him back for the Christmas Show the following month and maybe we could do some shopping on our way out of town the following day.
One of the few things Casey likes more than a Shoji show is shopping, and I vaguely remember mindlessly repeating, “Yeah, Casey, sure we’ll get you one of those,” as I fell into a deep sleep. I woke the next morning to him on his phone with my dad telling him that I was taking him shopping for a Shoji Tabuchi sparkly American flag jacket… oops!
After an exhaustive search (thankfully I was feeling better) we stumbled upon the Touch of Class formal wear store. Aside from regular formats, they also carried stage clothing — not much, just a few suits, but Casey spotted the red sparkly tuxedo the second we walked in and went straight to it. They didn’t have an American flag version so there was no way he was leaving without that tux. The price was a little much, but he had some money he’d saved up, and I covered the rest, which cost less than another night in the hotel and tickets to the show.
The day we bought the tuxedo there was a beautiful young lady getting a final fitting on her wedding dress. Casey kept giving her sideways glances as he tried on the tux (it surprisingly fit perfect), which I thought meant he was shy and nervous. But to my surprise it meant so much more. He knew that soon his younger cousin, JoAnna, would be getting married and apparently as he watched the young lady twirling happily in front of the three-way mirrors, he started to plan how he would play a leading role in his cousin’s upcoming nuptials.
The red sparkly tuxedo seemed to have magical powers on Casey. He had a confidence we’ve never seen before. Usually Casey is terrified of crowds, and in the past we’ve always had to stand at the back during family weddings because he’s so nervous and finger-stimming throughout. But as the wedding day approached Casey announced he would be walking Jo down the aisle.
JoAnna was thankfully excited that Casey wanted to play a part in her wedding and didn’t mind at all that someone in a sparkly red tuxedo might upstage the bride, as long as that someone was Casey. We had no idea how Casey would react when the doors opened and all eyes were upon him so we had arranged for him to walk Jo down the aisle for the photographer before anyone else arrived. This way her father would retain the traditional role, but Casey would have his special moment with Jo without the stress of an audience.
I cried. Oh yes, I cried when my son confidently walked his cousin down that aisle.
In that one joyful moment, there was also sadness — sadness in the knowledge that he will never walk his own daughter down the aisle.
Each time one of his younger cousins has achieved a life moment like this, there’s a little piece of my heart that aches. That poor little tattered piece of my heart has been through a lot…
I remember when his cousin, eight months younger than he and raised like a sibling, went on her first car date; I bawled like a baby. How was it possible that she was dating when Casey was still in diapers?
When his sister, Sam, got her driver’s permit, she jumped behind the wheel of the car, and I got in the passenger seat. From the back seat, we heard Casey’s panicked voice: “She’s not suppose to do that! The cop’s gonna ‘rest you, Samanda N’cole Wason!” He simply couldn’t believe that I was going to allow his sister to drive the dangerous car. We knew he meant business; it’s bad when he uses all three of her names. For some reason this broke my heart. It was the first time he seemed to notice that the others, his younger cousins and his baby sister, were growing up and leaving him behind.
When my nieces welcomed their babies into the world, I cried. Even these most joyful of moments had pangs of heartache, as I was reminded once again that this was not my reality, not Casey’s reality. I’m Granny Bill to those babies and my sisters have graciously shared the grandmother role with me for Lexi, Avery and Chase (and two more are on the way), and I’m thankful. But these moments, blessedly brief as they are, still hurt.
That’s why this moment in time meant so much to me. Seeing Casey, confident in his red sparkly tuxedo, walking JoAnna down the aisle as if she was royalty. The significance of that moment brought tears to my eyes and was not lost on Casey either, who was focused on his carefully measured steps. We had practiced… a lot.
My tears were for the future that would never be, but then JoAnn’s 5-year-old daughter, Lexi, who was standing next to me as Casey and Jo, came near said, “I wanna walk the aisle too!”
Casey didn’t hesitate, he simply reached out and took her hand in his and escorted both mother and daughter down the aisle. Seeing Lexi look up at him with love — in that instant the heartache was gone and pure joy filled the void. Because when he took her hand, I saw a future where he plays an important role in Lexi’s wedding. I could see Jon, her daddy, on one side and Casey on the other walking this precious girl down the aisle.
Casey not only walked that aisle with confidence, he went on to rock the whole wedding. Even though Casey knew very few of the groom’s family members he spoke to several and hugged more than a few people he’d never met before.
But the real shocker was his desire to dance. He danced with us all, stopping briefly for a snack from the nacho bar, then went back on the dance floor. He would finish a dance then look for and choose his next partner. Without a word and while standing in the middle of the dance floor with all eyes upon him, he would point to his next choice, then wave her out onto the floor. He didn’t just reserve himself for the girls. The groom got a dance too, as did his Papa and his cousin, Jimmy. It was such a joy to watch.
JoAnna had included (just for Casey I believe) the chicken dance song among her reception music choices. This thrilled Casey to no end, and his eyes lit up as he recognized the song within the first few bars. A large group of us danced the chicken dance with him which was followed by The Cotton-Eyed Joe (another of Casey’s favorites).
He made it almost to the end of that song before I felt his grip tighten on my hand, seconds before he went into a seizure. It was a mild one, and we got him into a chair, but it was the end of his dance moves for the night. Someone got his wheelchair out of the van, and we headed home soon after that. But wow, what a night!
I know that Casey is going to walk a lot of aisles in his lifetime; this was really just the first. That red sparkly tuxedo is going to come in handy again someday! His sister, who, as Maid of Honor to JoAnna, got to see the behind-the-scenes aspect of a wedding for the first time has announced that she will be skipping all that mess and going to Vegas when her time comes. But for her brother’s sake, she plans to have Elvis officiate the ceremony… which will make it every bit as much of a joyful experience for Casey as it is for Sam.
I bet Elvis will love Casey’s sparkly red tuxedo. Hear more from Conversations with Casey on Facebook.Want to end the stigma around disability? Like us on Facebook.
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